My forearm muscles hurt, my right hip joint hurts, my swollen left knee hurts, I have brain fog -- I can't remember most names, and I have trouble with word retrieval. I can't wake up. I don't sleep well, and I can't make it through Costco without aching to get back home to my couch. Sometimes my eyes go out of focus. I get electrical zingers down my arms, and nerve pain that comes and goes. My neck is sore and crickity.
Tomorrow some of these symptoms may be different. Arthritis that moves from joint to joint? Side to side? I can't read much, considering I have acquired the attention span of a gnat. Spelling that was once easy, is now fleeting. I feel dumb because I can't answer "Jeopardy" questions much anymore -- things I know I knew. I can't work -- no stamina. I forget things. Some days I feel great, but other days and without warning, I'm in no-wonderland, falling down the rabbit hole again into the dark, little-known world of Lyme disease and its co-infections.
As I suffer through the pain, I remain somehow still hopeful that my journey through chronic Lyme disease and its cohorts will end soon. It's been a very long 10-plus years. I know more than I ever wanted to know about this disease and the destruction left in its path. I'll bet, sadly and humbly, that I know more about Lyme disease than most of the doctors in California. And that is the crux of the matter. Why don't our doctors recognize, and know about Lyme and its all-too-prevalent co-infections?
Lyme comes from the bite of the black-legged deer tick, Ioxides Pacifica, here in California -- a tiny tick most would not notice. This is not your average dog tick. As most Lyme sufferers will tell you, the danger lies in not just the Lyme disease itself, but in the little known co-infections that accompany it.
Ticks are nasty creatures who need blood meals to live. First they bite the possum, then the rat, then the fox, and then you. Like using a dirty needle, all manner of parasitical filth besides Lyme is passed along. Diseases called Bartonella, Babesiosis, rickettsia, erlichiosis, anaplasmosis. What? Diseases I wish I'd never heard of. I was perfectly healthy before all this.
Well, you say, but Lyme is an obscure disease that mostly inhabits the northeast. We don't have Lyme here in California. Why should I worry? Here's why: According to Lyme.org, Northern California is one of the most endemic places in the U.S., along with the northeast, Wisconsin and Minnesota. Wisconsin and Minnesota. Go figure. Lyme is actually found in every state in the nation and has been discovered in ticks in every county in the Bay Area, except San Francisco.
Lyme, along with being the No. 1 vector-borne disease in the U.S., is at epidemic proportions, according to the Centers for Disease Control (CDC). And growing. We've all heard of AIDS, and West Nile virus, and so have our doctors. The incidence of Lyme is 10 times those, and those are only the reported cases. Lyme doctors estimate 200,000-300,000 people in just our state alone with undiagnosed Lyme.
The tests for Lyme aren't particularly definitive. They are based on the antibodies your body puts out to fight the disease. Some people are so sick they aren't putting out antibodies at first. So it looks like there is no Lyme when they may be the most ill of all. It has to be a clinical diagnosis in some cases, with Lyme often showing up after antibiotics have helped the immune system start producing antibodies on its own.
A young girl recently came to our Oakland Lyme support group, not sure if she had Lyme or not. She was one of the lucky ones. She had been bitten by a tick and had a rash. She had no insurance and went to the county hospital for treatment. The doctor she saw said it wasn't a Lyme rash and recommended no treatment. She had to ask him for antibiotics, so he relented and gave her enough for, wait for it, one day.
All of us in the group gasped in unison, and told her to get thyself to a Lyme MD now! Do not wait, we said! Do you want to end up like us? I think we convinced her as we each told our stories of discovering we had Lyme, not one diagnosed initially by an MD, and of the years we all have suffered because of not being diagnosed early.
Many other sufferers, myself included, have had to solve the Lyme riddle on our own. I was lucky enough to have only Lyme, Bartonella, and a type of rickettsia, a spotted fever. I realized that I had Lyme disease after 5 1/2 years of occasional flu- like illnesses, bad left knee, and myriad other odd symptoms. My immune system was fighting hard and I wasn't as sick as some, so it took some time to figure out. After a knee operation, and being diagnosed with mixed connective tissue disease by a rheumatologist who said I did not have Lyme, I began to research my symptoms on the Internet. Ah, the Internet -- bane of many doctors. But thank God for Google. There it was in black and white on a lighted screen. Could I have Lyme disease?
I read "Cure Unknown," aka "The Lyme Bible," by Pamela Weintraub, a science editor at Discover magazine, who chronicled her family members' ordeal with Lyme. I underlined and tagged page after page, relating to just about everything. I found a "Lyme-literate" MD after seeing his name mentioned often, online. He did the appropriate tests, the so-called Western Blot and tests for Bartonella, Babesiosis and ehrlichiosis -- the three most common diseases in California.
The test for rickettsia has more recently been added to the mix. Now 10% of my doctor's new patients test positive for it. And my rickettsia has kept me from getting rid of the Lyme. Strange as it may seem, doctors who treat Lyme and study it have realized that in most cases you have to get rid of the co-infections before treatment is successful on Lyme. Finally, I see light at the end of the tunnel.
I'm much better now. Only a few symptoms left. So maybe I'm on the last leg of my journey. I was finally put on doxycycline, drug of choice for both rickettsia and Lyme. Lyme is a learning experience for both patient and doctor since it has not yet been studied as much as other conditions. To date, relatively little money has gone for research.
One of the things I respect about my doctor is that he is willing to say "I don't know" if he doesn't. He has treated thousands with tick-borne diseases. He has a pretty good cure rate, or a "wellness" rate -- who knows if you are ever totally rid of the bacteria, but about 70% of his patients get well enough to go back to normal lives.
It is possible only the "cysts" remain for me now. Under antibiotic attack, Lyme can go into round protective shells or be surrounded by "bio-film' slime masses to shield itself from the drugs. Lyme can change its outer surface protein so that your natural killer cells cannot recognize it. Therefore your immune system will figure it's done and retreat. It has to start all over to recognize the enemy. And then Lyme changes its cloak again. Exhausting and depleting. Now I know what chronic disease is. I feel like I'm wasting many good years. And I'm not patient.
I went on a cyst buster antibiotic, tinidazole, as a final stab at getting rid of the Lyme by breaking up the cysts. And you know what they say about breaking up ... I hate to even consider that I may be one of the 20-30% of Lyme sufferers who cannot get rid of the Lyme.
For now, let's ignore the fact that many infectious disease doctors have been trained to consider Lyme is easy to cure with two to four weeks of antibiotics. OK, maybe that's true IF you catch it right away, and you recognize it, and you don't have any co-infections. Lyme can affect every system of the body: skin, internal organs, joints, brain, tissue, stomach and intestines. Worse, not everyone presents with classic symptoms. So it's a difficult diagnosis -- my family doctor didn't have a clue. Most don't. Would yours? In my case, those nasty bugs got a five-year head start. They made good use of it.
There is a pitched professional battle going on between the IDSA (Infectious Disease Society of America) and ILADS (International Lyme and Associated Diseases Society). These are premier professional organizations with great political influence.
The two groups are in fundamental dispute, with no clear resolution about the treatment of Lyme. Back when doctors could patent part of the disease for possible cure (spelled p-r-o-f-i-t), a group of infectious disease doctors did just that. They made a vaccine, got it approved by the FDA and started using it on people without Lyme. Four years and many-a-lawsuit later, SmithKline Beecham took it off the market, leaving in its wake people who now had permanent symptoms mimicking Lyme.
The definition of Lyme propounded by IDSA doctors is limited to mostly arthritic aches and pains, and is "easily cured." That was, and ever will be the definition unless the Centers for Disease Control starts listening to the ILADS doctors and researchers who treat Lyme every day. Equally important, co-infections are almost always present. These specialists know the destruction left by doctors who miss the diagnosis as the bacteria multiply to a chronic state within our bodies, and are thus much harder to destroy. There is now overwhelming evidence that the disease is not cured by two weeks of antibiotics. But it's hard to teach an old dog new tricks.
The Lyme bacterium, scientific name Borrelia Burgdorferi, is a "spirochete," a long spiraling creature. It is one of the biggest bacteria we know, with many genes and more DNA than any other bacteria. It is in the same bacterial family as syphilis, but is easier to treat, having a relatively small genome. I remember reading stories about people who were untreated for syphilis, becoming lunatics with lots of crippling illness in their bodies. If it is found early, syphilis is cured with antibiotics. Left untreated, it can devastate people and eventually kill them.
Now, picture a bacterium on steroids, much smarter than syphilis, invading your body. It doesn't stay in your bloodstream, where it would be relatively easy to cure. No, it burrows into your tissues, and settles-in for a long siege if not treated right away. When attacked, it morphs into cyst form, protecting itself from antibiotic attack, and is difficult to lure out.
You get sick -- some of us more so, some of us sooner than others, and no one can pin it down. Which system of the body would it attack in you? Mine was mostly arthritic, but as time has gone on, I have developed brain symptoms, neurological symptoms, muscle pain, etc. Difficult for doctors to diagnose, yes, if they don't know about it, but if I could figure it out from the Internet ...
I now know how frustrating it is to be on the front lines of an emerging disease, not supported by mainstream medicine. Most Lyme-aware doctors, MDs just like yours, have either had Lyme themselves or had someone close to them get Lyme. I like to call it Lyme-plus, because of the co-infections, meaning that one antibiotic doesn't fit all. In fact, Babesiosis, one of the fastest rising tick-borne diseases, isn't a bacterium at all. It's a protozoan, similar to malaria parasites, and must be treated with anti-malarial meds. If you give blood, you will notice they now ask if you have ever had Babesia or Babesiosis.
Lyme is expensive to treat. Most insurance companies find a way to stop paying, citing CDC definitions of Lyme, and Lyme-literate physicians don't take insurance. They have chosen to better use their time treating chronic Lyme, rather than being entangled in chronic battles with insurance companies.
To the uninitiated, all this sounds like we're hypochondriacs -- there's even a report from CDC staff that coins a term describing us: "Lyme loonies." We tend to be loonies until you get it, and then you come to understand. You learn about the under-diagnosing, the ignorance, and the political games the Infectious Disease Society doctors are playing with the support of the CDC.
Indeed, many states punish doctors who treat Lyme with long-term antibiotics. That is slowly changing. State legislators, many who have had Lyme or someone in their family has, are championing new legislation that brings Lyme to the forefront. New York Gov. Cuomo just signed such a bill. Why? Because his daughter had been infected with ... you guessed it, Lyme disease.
I wish I'd never heard of Lyme, but now that I have I'm going to make sure I inform people about a very real threat that exists all around us. Be aware of your surroundings. Stay out of the grasses and bushes. And if you get bitten by a tick, for God's sake get tested. Not by the ELISA test most doctors use, but insist on a Western Blot from IGeneX in Palo Alto. And get TESTED FOR CO-INFECTIONS. Do not wait. Find a doctor who will listen.
My last tests were clear for Lyme. And all my tests were normal except my C4 inflammation test was still high and I still have some joint pain. So I am staying on meds for one more round. My tests have been clear before and the Lyme has flared again. We'll see. I am daring to think this is the end of it.
May is Lyme Disease Month nationwide, but unlike Cinco de Mayo, it is a year-round celebration in California. I got mine hiking up behind Tao House in Danville. A friend got it in Hap Magee Ranch Park sitting on the lawn with her kids. Another was infected in her garden in westside Alamo. There are now signs posted about ticks behind Monte Vista High School, on the beaches of Marin, and in Tilden Park. We in Northern California live in a Lyme-endemic area.
Please be aware, take precautions to cover skin exposed to ticks, and check yourself after being outside. Don't rely on DEET -- Dr. Eva Sapi of the University of New Haven, a Lyme "veteran" and now a Lyme researcher, has discovered that ticks walk right over DEET and just keep on going. It does not protect you from these vectors.
Spring is tick nymph time. They are the most dangerous of all. They need blood meals to survive and mature. If you do get bitten by a tick, or suspect you might have Lyme disease, advocate for yourself with your doctor. Get tested for co- infections, as well. Find a Lyme-literate M.D. Please save yourself years of suffering -- Lyme logging is no fun. Don't wait. It is in our neighborhoods.
The ILADS website www.ilads.org and Lymedisease.org are great places to learn about Lyme disease.
Sue Savod lives in Alamo. She is involved in organizing a Lyme disease advocacy and awareness group. Contact her at firstname.lastname@example.org.